Project Description

Information Commons
Building the Medical Information Commons

Many national and international public and private initiatives are forming to collect and share data on a large scale for research and clinical use. Collectively, these efforts may lead to the creation of a medical information commons, a networked environment in which diverse sources of health, medical, and genomic data on large populations become widely shared resources. The success and value of such a commons will depend on development of policies and practices for effective governance that address barriers to data sharing and are developed with informed input from patients and members of the public whose data may populate it.

The objective of this project is to engage expert stakeholders to inform policy decisions about effective governance for data sharing, while using deliberative methods to obtain informed public input to ensure that the values, rights and interests of individuals whose data may populate the information commons are represented.

Supported by: R01HG008918, National Human Genome Research Institute, NIH

Advisory Council Meeting - March 2-3, 2016

Academic and industry leaders from healthcare systems, clinical labs, technology companies, academia, government and nongovernmental organizations met to provide the Advisory Committee with a platform to discuss current issues concerning data-sharing policies and practices.

Project Personnel

Principal Investigators

Amy McGuire, J.D., Ph.D., Co-Principal Investigator
Robert Cook-Deegan, M.D., Co-Principal Investigator

Co-Investigators

Mary Majumder, J.D., Ph.D., Co-Investigator
Patricia Deverka, M.D., M.S., Co-Investigator
Barbara Koenig, Ph.D., Consultant

Project Personnel

Juli Bollinger, M.S., Researcher

Center Project Personnel 

Angela Villanueva, M.P.H., Research Associate
Jill Oliver Robinson, M.A., Sr. Project Manager
Erika Versalovic, Project Coordinator

Publications

Cook-Deegan R, McGuire AL. Moving Beyond Bermuda: Sharing Data to Build a Medical Information Commons. Genome Research. 2017. Forthcoming.

Majumder MA, Cook-Deegan R, McGuire AL. PLOS Biology 14(11), 2016: e2000206. doi: 10.1371/journal.pbio.2000206

Presentations

Majumder M, Garrison N, Bonham V, Villanueva A. Critical Distance in ELSI Genomics Research - More Than Advocacy for the “All-Frills Yuppie Health Care Boutique"? American Society for Bioethics and Humanities annual meeting. Washington, DC, October 2016.

McGuire AL, Goldstein M, Rodriguez L, O'Donnell C. Building a Medical Information Commons: Ethical, Policy and Practical Challenges. American Society for Bioethics and Humanities annual meeting. Washington, DC, October 2016.

Villanueva, A. Genes and the Environment: Current Data Collection, Sharing and Privacy Protection Practices. American Public Health Association’s Annual Meeting, November 2016. Denver, Co. Poster Presentation.